Neuropathy pain, GP has given up - what do I do?

[Mashie44]

Hi all,

my GP changed and the new one seems to have given up, since the neurologist concluded I had no damage to long nerve fibres. I SI B12 about once a week (I usually leave it until pins and needles start) and take folate + D3. I'm lying in bed now close to tears, with fairly sharp pain in both feet and hands, after a night when the 'tingling'/ pain made it almost impossible to sleep. I started having this about 11 years ago but it's far worse. I also am so stiff on waking / after sitting that I walk as if I were 80 (I'm 55). Two toes have no feeling at all. Again, GP appears to think all this unimportant.

I don't know what else to do and am frightened of it becoming worse... any ideas? It feels as if the NHS has run out of ideas and discarded me - because all tests say I am ok (self-medication has fixed past vit D, folate, ferritin and B12 deficiencies).

[jarlethblue]

I had and have the very same symptoms - burning and tingling and darting pain in legs and arms. numb toes on right foot, loss of ankle reflexes in both legs....restless legs at night.....I am now SI every second day if not every day and these symptoms are improving. Hope this helps. J

[Mashie44 in reply to jarlethblue]

thanks - it does help, as that was my thinking too at this point -- just did a jab (second this week). Am also resolved to be better at taking the vitamin tablets as I've fallen off a little lately (partly because GP half-convinces me it is all in my head and surely I ought to be taking anti-depressants since I have this imaginary physical problem...)

[jarlethblue in reply to Mashie44]

i am so fed up of doctors prescribing anti-depressants instead of them listening to their patients and using their eyes and ears to see the real improvement in those of us who take care of our own B12 journey. I think you need to inject much more frequently....the guidelines are every second day until neuropathic symptoms disappear......x

[fbirder]

I presume you've tried ordinary pain killers and they have no effect? That would be normal for neuropathic pain. What works for mine, when it gets very bad, is codeine (in cocodomol). But you don't want to be taking that every night.

Have a chat with the GP about trying a drug that specifically treats neuropathic pain. There are three main ones - pregabalin, gabapentin and amitriptyline. The first two are for epilepsy and the third is an antidepressant (although at a lower dose than when used for depression) but they are all used regularly for neuropathic pain.

I take gabapentin and it keeps it bearable most of the time. I used to get the odd really bad night, when the codeine had to come out, but they've nearly all gone since I started taking alpha lipoic acid (after discussing it with my neurologist).

[Mashie44 in reply to fbirder]

thanks - I only take painkillers rarely and should have done last night. Probably sounds silly but I've always resisted taking drugs (it's an emotional thing - my dad was an addict. I sometimes wonder if it was related to B12 as he was crippled with limb pain from his 40s on, having been like me an elite athlete. His grandfather died of PA). Makes it ironic that GP thinks I inject B12 for the heck of it.

So, my resolutions right now are inject every other day, take all my self-prescribed vitamins every day and take pain killers when in paid (doh!). Thank you to the sensible people out there!